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When I mention the possibility of endometriosis to a patient, it’s pretty rare that she hasn’t at least heard of it, even if she’s not sure exactly what it is. The simple description is that endometriosis is a condition in which the glandular tissue that normally lines the uterine cavity appears in other places, such as the lining of the pelvis, fallopian tubes, ovaries, or bowel.

Rarely, the uterine glands can end up in really weird places, like the lung, bladder, or kidney. Each month during menstruation, this tissue responds to hormonal changes, just like the tissue that lines the uterine cavity. And yes, women with lung endometriosis cough up blood once a month.

Since the tissue is not where it’s supposed to be, various problems can ensue, such as scar tissue, inflammation, ovarian cysts, painful intercourse, and the most commonly appreciated endometriosis symptom, excruciatingly painful periods that get worse with time. The degree of pain is not necessarily related to the severity of endometriosis. Women who appear to have minimal endometriosis sometimes suffer the most.

Like many medical conditions, there are a lot of misconceptions floating around, so I would like to bust a few of the myths I regularly hear.

Myth 1: Endometriosis Is Most Common in Young Caucasian Women

In the 1970s and 80s, the accepted medical belief was that Caucasian career women were the only ones at risk for endometriosis. Looking back, it’s not that those women were more likely to have endometriosis, but simply that they were more likely to be taken seriously when they complained.

It wasn’t until the 1980s that it was recognized that African American women and teens are just as much as risk. Any menstruating woman can have endometriosis, whether she is 16 years old or heading toward her last tampons. It is unknown how many women have endometriosis since not everyone has symptoms and the diagnosis can’t be made definitively without surgery. What we do know is that it is diagnosed in up to 30 percent of menstruating women who have menstrual pain severe enough to warrant surgery.

Myth 2: Women With Endometriosis Only Have Pain During Their Periods

Scarring and inflammation from endometriosis can result in all day, every day pelvic pain for many women. In one study of women with known endometriosis, 45 percent had pain with intercourse, 29 percent had bowel pain, and 69 percent had pelvic pain even when not menstruating. This isn’t just about bad period cramps.

Myth 3: Women With Endometriosis Can’t Take Estrogen After Menopause

Not true! Women who have suffered for years from painful periods do not need to suffer from hot flashes and vaginal dryness once the agony of endometriosis is finally over. Taking estrogen for relief of menopause symptoms will not reactivate endometriosis.

Myth 4: Women With Endometriosis Always Have Heavy Periods

Actually, heavy periods are more commonly associated with adenomyosis, a cousin to endometriosis that sometimes goes hand in hand. In adenomyosis, the glands infiltrate into the wall of the uterus instead of getting outside the uterus. Women with endometriosis might have heavy periods, but they also might have very light periods.

Myth 5: Women With Endometriosis Are Usually Infertile

It is true that women with endometriosis are at risk for infertility, however, many women with endometriosis have no difficulty getting pregnant. In fact, many women with endometriosis don’t even know they have it. Having said that, if you know you have endometriosis, the best way to minimize the chance of endometriosis-related infertility is to suppress periods until you are ready to conceive. That may mean taking hormonal contraception continuously (no placebo pills) or using a levonorgestrol IUD. Don’t stop your contraception until just before you are ready to get pregnant. And if not pregnant within a few months, see a specialist sooner rather than later.

Last Updated:3/10/2014

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